I play mind games. Really.
I create memory games in hopes to boost cognitive function in people with Parkinson’s disease (PD). I know the effectiveness of these games is still being debated but, hey, at the very least they provide a welcome distraction from PD.
But let me backtrack a little. On February 10, 2014, I heard the end of me in four words, “You have Parkinson’s disease.” Though my heart kept beating, I realized that my life as I knew it was gone that day. When after a few weeks the echo of the words “progressive, incurable disease” went down a notch, I started to realize that my brain was different.
From being a compulsive reader I began to draw obsessively. No longer did I carry a couple of books in my bag in order not to run out of reading material... Now I always have pens, markers and sketchpads in my bag, “just in case I have a minute to draw.”
And yes, now we are back on the conversation’s track regarding the mind games. They are a product of this compulsive drawing.
Someone asked me recently, after seeing me draw on and on without even pausing to drink coffee (which would have been unthinkable four years ago), “If you could, would you go back to your previous life, when you were healthy and worked in an office, or would you choose to stay in this life, in which you enjoy drawing but have Parkinson’s?”
When you have your health and youth, you follow a routine. You take things for granted. You think that life just flows by. But when you have to fight for every inch of it, it becomes precious. You say, oh, I’m b.r.e.a.t.h.i.n.g! In my case, as a bonus I found my purpose in life, which is helping people through the images and words I craft.
I also think a silver lining of the dark Parkinson’s cloud is being a part of an amazing network of parkie peers and other fabulous people you get to meet along the way. I believe that sharing makes us all stronger, so I have joined many activities.
- I’m part of The Tampa Bay Tremble Clefs, a Parkinson’s chorus that helps patients find therapeutic values in group singing. Together, we sing as therapy. Led by speech pathologists, it helps our voice, our articulation and even helps you breathe.
- I participate in a pilot program that teaches me self-efficacy and how take ownership of my life and Parkinson’s in order to have a better outcome.
- My friend Joe Fabrizzio and I started a support group in New Port Richey, FL. We gather once a month to talk about our symptoms and how we’re coping. We’re all so happy to finally have a place where we can be understood. We take care of each other. I love all my support group members like siblings, we are family. Twice a week we do a Parkicise class, as I call it, for it is an exercise program tailored especially for Parkinson’s.
I think that networking is as important as exercise and as important as medicine. I’ve met so many more people since I’ve been living with Parkinson’s. I feel more intense about the friendships I form, but that could also be the meds talking.
So far, I’ve attending two Moving Day® Tampa events. I love meeting with that huge chunk of my Parkinson’s family. It’s powerful to see that so many people share this condition. I’m also moved to see how many families are there to support their mother, father, grandparent or sibling. At the same time, I can’t help but remember that there are plenty of people who can’t leave their home, or lack a supportive community, and that strengthens my resolve to work for Parkinson’s awareness.
Which brings me back to the beginning of this conversation and the mind games. The more I found out about my brain, the more I wanted to create a game to help me and the entire Parkinson’s community with our cognitive issues, which are as important as the motor issues, if not more.
My memory card game comes with 24 cards with my drawings. Traditional matching games use only images. In mine, one piece of a matching pair has text in it. This way, the game engages both the limbic system and the part of the brain that processes language. I say that it is sort of exercise for all mental muscle groups!
I also use the card game as a conversation piece. I figured people with Parkinson’s can use it as an icebreaker since the cards can prompt and guide conversation.
Finally, I want to share the phases that I have gone through personally in regards to Parkinson’s, to see if they echo someone else’s journey:
- For the first year, the meds took care of most of the symptoms. That made it easy for me to forget that PD is a progressive disease.
- Then the little reminders started to appear. A Involuntary shaking of the hands, arms, legs, jaw or tongue. The typical Parkinson’s tremor is “pill-rolling” – it looks like holding a pill between thumb and forefinger and continuously rolling it around. Some people report an internal tremor, a shaking sensation inside the chest, abdomen or limbs that cannot be seen. Most Parkinson’s tremor is “resting tremor,” which lessens during sleep and when the body part is actively in use. here, a Temporary, involuntary inability to take a step or initiate movement. there. I was still pretty cocky: “I’m going to beat it. I’m going to kick Parkinson’s in the face.”
- But then I realized that Parkinson’s is so much bigger and has sharp teeth that bite hard, so I became guardedly optimistic. I know that I’m outmatched and Parkinson’s will win the match at the end, but I will do my best to cope with it and try to squeeze out every little bit of joy I can out of my days.
My father taught me that a sense of humor is the only weapon against such inevitable fiends, so I hope to have the last laugh and tell Mr. Parkinson: “All right, you win, but I had a wonderful ride out of life”.
I love the Parkinson’s Foundation. Thank you for being there for me. It’s bad enough to deal with such a mean disease, but at least it makes it bearable when you’re working with others.